On May 10, 2006, at only 6 months old, Sophie was diagnosed with Infantile Spasms...a RARE and CATASTROPHIC form of epilepsy. She continues to battle this disorder on a daily basis. Only after she had the majority of her left hemisphere of her brain removed (on May 29, 2009) has she had a relief in seizures (though she continues to show spiking in her EEG). She has shown much improvement in development since the surgery.
Monday, May 14, 2007
Nightly seizures...
Sophie is back to having nightly seizures. It is so sad. It just breaks my heart.
I hate to hear that it's taking so long to find just the right way to tweak her diet and meds to get a marked change in her seizure activity! She's so lucky that she has parents that never retreat and just keep pushing forward.... fighting Sophie's monster. There's going to be something that's going to slay that dragon and I know you'll find it!!
Hey, I am from the IS yahoo boards. I just LOVE your little Sophie! She is beautiful! Im so sorry for the late night seizures. I am taking my Kali to Dr.Chugani and I read your experience with the visit. I pray your Sophie will be able to have some SZ free days/nights soon.
3 comments:
Hang in there Elaine....
My thoughts are with you.
I hate to hear that it's taking so long to find just the right way to tweak her diet and meds to get a marked change in her seizure activity! She's so lucky that she has parents that never retreat and just keep pushing forward.... fighting Sophie's monster. There's going to be something that's going to slay that dragon and I know you'll find it!!
Love,
Barb
Hey,
I am from the IS yahoo boards. I just LOVE your little Sophie! She is beautiful! Im so sorry for the late night seizures. I am taking my Kali to Dr.Chugani and I read your experience with the visit.
I pray your Sophie will be able to have some SZ free days/nights soon.
Lisa
Mama to Kali
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